Rob is one of Dorothy House’s most ardent supporters and has been fundraising for us since he first came here in 2018. We joined him in the garden, and he explained what Dorothy House does that makes him such a fan.
‘If it wasn’t for the dying and being sick, being disabled could be quite fun – you get to meet so many different people. I’m a very social person and love meeting new people. When I was first diagnosed, and before I came to Dorothy House, I was signed off from work, I was on my own, bored and stuck at home. But I get my energy from social interaction. We are social animals and I just felt isolated. In the background medical people are doing stuff, but in between appointments you just feel like you’ve been forgotten.
‘For most people, their job or their hobby is their social identity. I used to do all sorts of things – gardening and DIY – driving machinery at work. But my condition is about deterioration in movement – it all got taken away from me and I lost my confidence. So when I came here it was like they saved me. I’d got really depressed. They gave me a reason for living again.
‘I started to go to the Dorothy House Young Person’s Group and it worked really well. Everyone there was terminally ill. They were all from different walks of life but we all seemed to gel. I came up with an analogy – a Venn diagram – the overlap is that you’re all ill – and the more you get to know people, the more you overlap.
‘The Young Person’s Group was great but I stopped going because it became too far to travel to. Then I got invited to come to the Day Patient Unit at Dorothy House in Winsley. It turns out my hobby now is socialising. And I love it. And, it turns out I’m quite good at it.
‘I have unlimited contact with Dorothy House because there’s always someone on the end of a phone. But I come to Winsley every Thursday. Dorothy House made it easier for us – they moved everything around so we could all come together as a family. Dorothy House arranges transport for me to get in here in the morning and I have physio here – it really helps – I’d have it all day, every day, if I could, because your joints are meant to be moved. It keeps my joints freed up and as happy as they can be.
‘Then my wife and daughter come here in the afternoon for play therapy – my daughter looks forward to it every week – and my wife sees a therapist. I also see a therapist for half an hour – then we all leave together in our car. There’s no going backwards and forwards to and from home which is really great. Being disabled is actually a full-time job. Speech therapy, physios and doctors – the appointments are endless.
‘At DPU we do something called IPOS every few weeks – it’s a list of symptoms and you have to say what your three main concerns are. Because I see the nursing staff so regularly, I’ve built a rapport with them so it’s easier to be open with them. The IPOS list of concerns might not be physical. They could be mental health or financial anxieties – it goes on a system that everyone has access to, so you’re not constantly re-explaining where you are and what problems you’re having.
‘Dorothy House has also helped me and my wife start talking with our kids about my illness. My older daughter read a book they recommended – she didn’t know what ‘terminal’ meant – it opened up that conversation, in a good way.’